Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Ok, let's see how many ?? or comments I can respond to without becoming too lengthy. First , yes I did see the show about the little girl who had limb lengthening surgery. I was flipping channels and settled on the Oprah show & caught it. I never did see what her medical problem was for her to have it done, so I wasn't sure why exactly hers was done. All I remember is that it looked extremely painful!! And the doctor that Dr. Gupta would send us to IS Dr. Paley, he is very impressed with his work and technique. Dr. Gupta mentioned that one of his partners was out of the office at a conference being given by Dr. Paley. Dr. Gupta says he has done the surgery before himself. He was explaining that the bone would be broken, a rod placed inside and everyday, something like a ratchet would be turned I think like 1 mm everyday to extend everything. This small amount would allow all the nerves, arteries, etc.. to grow along with the bone. Sounds terrible!! Pat, I also know of an RSS child from the networking list who had the limb lengthening done. I just corresponded with the mother via mail, never spoke to her on the phone. Last time I wrote her, which was quite some time ago and inquired about how her son was doing. I never got a reply. I do know how hard it is to get back to people though, so I will write to her again and tell her about this site, maybe she'll join. Yes, any info you would feel comfortable giving me about the surgery would be great. THANKS! Inga, Ian's left leg IS the skinnier leg. Dr. Gupta did not talk about any problems about it, but since limb lengthening was not our main subject, he just explained the procedure, and asked if I could compile any info on it regarding RSS. When we do talk about it more, that will be one of my questions. One of my old bosses had a son who had problems with one of his legs and one of his legs was actually very much different in girth from the other, but there was no leg length discrepancy. I had never seen that before in anyone else besides Ian and he was very small, so I didn't ask much about it affecting him. It didn't seem to bother him or hamper him in any way. This will just add to my to do list when I do my research at the med library. Thanks everyone for their input, I know I get windy at times, but I think we could all learn from each others and the kids' experiences.. Missy mom to Ian <br><hr size=1><b> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 1999 Report Share Posted September 12, 1999 , Well, let me clarify something because I think you must have not seen that I posted that Ian IS NOT growth hormone deficient, therefore GHT will not help Ian reach a final, taller height. If Ian were GH deficient and would help him obtain a final, taller height, then Dr G. would not be so against Ian receiving GHT. His reasoning is, why bother giving Ian GH if the end result is going to be the same as if he didn't receive it?? He doesn't think there is enough information about GH and how it will effect children overall. Since RSS is such a rare syndrome and they still can't say exactly what causes it, why add something else that they don't have enough information in with all this?? Now, I don't know about the shortening/lengthening of the shorter/longer length. We did not go into great detail about it. He told us about the procedure, the time frame, and who he would refer us to. The only thing that I can say on this is that he is probably looking at the doctors/hospitals where he believes the patients receive the best care and has the most information, so if those are the doctors that shorten the longer leg and that is what he agress with, then that is probably what his basis is going to be. Like I said, I will do my own research and read more about all of this. Ian's only 5,we still have afew years to go, so I can take a little more time to look into this. I really do appreciate you posting about the procedures in the UK. That gives me something to think about and read about. With the medical community, there are always going to be varying opinions, no matter what. We've seen that among us as parents here, some parents who weren't given enough info about it and some pedicatricians who have the " wait & see " approach with our kids. It's just something that we need to be all look into and be informed about regarding our kids & RSS. Missy mom to Ian 5 yrs old, 35 1/2 inches, 22 lbs <br><hr size=1><b> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 1999 Report Share Posted September 13, 1999 To Missy Heres another opinion from the uk My son Christian is 3year 4mo and has RSS.He has been on GH for 17 months and like your son is not GHD.When Christin started he was way below any centile,would hardly eat anything and was in hospital every 3 months because he couldn't fight infection.Now he is between the 9th and 25th centile,He eats all day and has not seen a hospital for over a year[other than check-ups].I'm definatly not saying that GH is the only option but being as big as your peers has lots of advantages.As far as i'm aware latest research is showing an effect on adult height. Just my opinion Good luck in what you decide to do Joanne[mum to christian 94cms and 29 lbs] re:limb lengthening , Well, let me clarify something because I think you must have not seen that I posted that Ian IS NOT growth hormone deficient, therefore GHT will not help Ian reach a final, taller height. If Ian were GH deficient and would help him obtain a final, taller height, then Dr G. would not be so against Ian receiving GHT. His reasoning is, why bother giving Ian GH if the end result is going to be the same as if he didn't receive it?? He doesn't think there is enough information about GH and how it will effect children overall. Since RSS is such a rare syndrome and they still can't say exactly what causes it, why add something else that they don't have enough information in with all this?? Now, I don't know about the shortening/lengthening of the shorter/longer length. We did not go into great detail about it. He told us about the procedure, the time frame, and who he would refer us to. The only thing that I can say on this is that he is probably looking at the doctors/hospitals where he believes the patients receive the best care and has the most information, so if those are the doctors that shorten the longer leg and that is what he agress with, then that is probably what his basis is going to be. Like I said, I will do my own research and read more about all of this. Ian's only 5,we still have afew years to go, so I can take a little more time to look into this. I really do appreciate you posting about the procedures in the UK. That gives me something to think about and read about. With the medical community, there are always going to be varying opinions, no matter what. We've seen that among us as parents here, some parents who weren't given enough info about it and some pedicatricians who have the " wait & see " approach with our kids. It's just something that we need to be all look into and be informed about regarding our kids & RSS. Missy mom to Ian 5 yrs old, 35 1/2 inches, 22 lbs ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 1999 Report Share Posted September 13, 1999 My daughter, was born with her left leg and left arm shorter than the right. When she was younger she wore a 1 cm lift on her left shoe. Over the years the discrepancy has gotten more severe. Just this year we found out the left leg needed a 3 cm lift. The discrepancy is really 3.5 cm difference. Her orhtopedist recommended to us that we might want to consider limb lengthening for her. She is also on GH. I wonder sometimes, if the GH is allowing her right side to grow at a faster rate than the left. Etha M. O'Connor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 1999 Report Share Posted September 14, 1999 Etha You don't say how old is, but started off at about 6mths old with about 1cm discrepancy. now he is 3yrs 6mths the difference is about 3cm, maybe 3.5 cm. He is not on GH, but you have a point worth pondering! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 1999 Report Share Posted September 14, 1999 __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 1999 Report Share Posted September 15, 1999 Missy, Have been away for a bit and just saw your 9/12 posting...you stated that " Ian IS NOT growth hormone deficient, therefore GHT will not help Ian reach a final, taller height " ..... Let me share our situation: 1. is very small for his age 2. Dr. thinks it is " mild " RSS 3. tested normal GH; Dr. H. says this doesn't mean anything for RSS kids. She thinks RSS kids have a neurosecretory dysfunction, something about how the GH is produced and when. 4. Dr. H. says GHT will indeed help RSS kids. 5. We are desperately trying to decide what to do. Dr. H. wants us to start GH in November. To GH or not to GH, that is the question. Katy -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 1999 Report Share Posted September 16, 1999 Hi Katy, You could try growth hormone for 6 to 9 months and see how responds. Then decide to continue or stop. Then every six months review your decision. Hope this helps. Ken M ---------- > >To: RSS-Supportonelist >Subject: Re: re:limb lengthening >Date: Wed, Sep 15, 1999, 10:35 AM > > > > Missy, > Have been away for a bit and just saw your 9/12 posting...you stated that " Ian > IS NOT growth > hormone deficient, therefore GHT will not help Ian reach a final, taller > height " ..... > > Let me share our situation: > 1. is very small for his age > 2. Dr. thinks it is " mild " RSS > 3. tested normal GH; Dr. H. says this doesn't mean anything for RSS kids. > She thinks RSS kids have a neurosecretory dysfunction, something about how the > GH is produced and when. > 4. Dr. H. says GHT will indeed help RSS kids. > 5. We are desperately trying to decide what to do. Dr. H. wants us to start GH > in November. > > To GH or not to GH, that is the question. > > Katy > -- > > --------------------------- Quote Link to comment Share on other sites More sharing options...
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